Hello, I'm reading alot about levothyroxine, reason ,I was given recently for hypothyroidism.i immediately have noticed pain in my bones & headaches that previously I had none. I was struggling with coping with my menapause (usual associated issues). Up until recently I suspected my symptoms were all to do with that.then I started getting swellings in my ankles& itching burning rashes .facial swellings like I'd had lip fillers & numbness (like an allergy) so I got tested & have this hypothyroidism ( with antibodies).I been put on 50mcg levothyroxine ,not taking long but deffo pain in bones from this.my doctors don't seem interested in my autoimmune issue ( I have Raynaud's too) which is why I wasn't concerned with constant cold .I asked what my levels TSH were & they wouldn't tell me! I was told I'll need to take this for rest of my life ( that's actually not true ) I'm worried that my own body function will be retarded but am stuck because I'm feeling so bad & want it to stop so I'll take the pills. I try to help myself with strict excersise ( which has helped me get this far & cope).can anyone give me advice on autoimmune best way forward as I feel that sticking me on levothyroxine is masking underlying autoimmune issue.im still itching too .also doc said they needed to discuss my cholesterol ( I pointed out it would look higher than normal because of thyroid? Why am I pointing this out to doc?) Seems I don't feel they really know what they are doing much) thanks for reading epic tale.
Levothyroxine ?: Hello, I'm reading alot about... - Thyroid UK
Levothyroxine ?
Hi betty, welcome to the forum.
You're right, they don't know much about thyroid, and care even less. Which is why we have to learn about our disease, ourselves. But, why do you say it's not true that you have to take levo for the rest of your life - or, at least, some other form of thyroid hormone replacement? Not quite sure what you mean by 'I'm worried that my own body function will be retarded'. Do you mean that your thyroid will stop making hormone? It's already stopped making enough to keep you well, or you wouldn't be on levo. Frankly, that's the least of your worries.
How much do you know about Hashi's (high antibodies)? It's an autoimmune disease where the immune system mistakes the thyroid for the enemy, and slowly destroys it. There is no cure for Hashi's, we can possibly slow down the process, but in the end, the thyroid will be completely destroyed, and you will be entirely dependant on thyroid hormone replacement, to stay alive.
Levo does not mask your autoimmune issues - the immune system attacks will continue until your thyroid is dead. All levo does is replace the hormone (T4) that your thyroid can no-longer produce in sufficient quantities to keep you well and symptom free. But, it will take a while, and several increases in dose, before you start to feel back to your old self. Hormones work slowly.
Do you live in the uk? There's no information on your profile. If you do, then it is your legal right to have a print-out of your blood test results, no matter what your doctor thinks about it, under the 1998 Data Protection Act. If he refuses to give them to you, he is breaking the law, and there are steps you can take to force him to hand them over - and I'm sure he wouldn't like that! lol
So, get your results and post them on here, with the ranges, and let's have a look. You also need to get your vit D tested. If it's low, that will cause bone pain. I've never heard of levo causing that. You also need your vit B12, folate and ferritin tested, because they could all be low, and causing symptoms. They need to be optimal for your body to be able to metabolise the levo.
When you go for your retest, make sure the blood draw is early in the morning - before 9 am - and fast over-night. Leave a 24 hour gap between your last dose of levo, and the blood draw. 
Welcome to our forum and am sorry you are hypothyroidism as well as Raynauds. It is quite usual, if we have one autoimmune disease to develop others.
As you have thyroid antibodies you have an Autoimmune Thyroid Disease, commonly called Hashimoto's. It is the commonest for and eventually leads to hypothyroidism as the antibodies attack the thyroid gland - they wax and wane - until you are positively hypothyroid.
To reduce the antibodies, going gluten-free can help but treatment is the same as for hypothyroidism, i.e. levothyroxine.
Forget exercise at present until you are on an optimum dose it can deplete our hormones particularly T3 which is the only Active hormone. Or do very gently exercise like walking or swimming.
Re doctors - we have to read, learn and ask questions as their training is so very poor that they know not one of the clinical symptoms. Whereas before the blood tests and levo were introduced we were diagnosed wholly upon our clinical symptoms and give NDT (natural dessicated thyroid hormones.
If hypothyroid we do have to take it lifelong as it is classed as a very serious illness if undiagnosed/untreated/undertreated. It can affect our heart as well as other parts of the body and we can develop other more serious illness, i.e. if we are on optimum of thyroid hormones which suit us we can lead a long and healthy life, If undiagnosed we die.
First things first. All blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours from the last dose of hormones and the test and take afterwards. This helps keep TSH at its highest and prevents unnecessary adjustments which keep us ill.
You're correct about cholesterol. It is a clinical symptom and should reduce with an optimum of levothyroxine or whatever hormone replacement one takes.
Many doctors will offer statins for high cholesterol or other medications for symptoms (i.e. statins for cholesterol) because they are poorly trained.
Ask GP (these wont all be done) for TSH, T4, T3, Free T4, Free T3, and antibodies. He should do B12, Vit D, iron, ferritin and folate. Follow advice above for getting blood tests and make sure your get a print-out of the results with the ranges and post for comments.
These are a list of symptoms:
thyroiduk.org.uk/tuk/about_...
bettyswallock What brand of Levo have you been given?
Definitely get the vitamin and minerals tests suggested.
Levothyroxine sodium 50 MCG .dunno what brand ? Doc said take no supplements , but I know I need something else for bones ect ,what can I do if they just chuck me out with this & basically say go & get on with it ,took me ages to even get to see someone, thought I was going insane ! In the end one of my clients said a family member had hypothyroidism & got swellings like mine so I insisted with doc to blood test me. They make me feel insignificant.now wanna see me over my FSH & I already know about that but wanted to avoid hrt ( struggled too long really)
Betty
The brand name will be on the box, it will also probably be on the foil back of the blister pack.
It will either be
Teva
Actavis
Almus
Wockhardt
Mercury Pharma
Those are the UK brands.
It's possible to react to any of them, particularly the fillers, but a lot of members have had problems with Teva, which is why I asked which brand.
If you had any reaction or side effects which came on only when you started taking Levo then it makes sense to try a different brand.
Ignore what your GP said about supplements. If you have any low levels or deficiencies with your vitamins and minerals then they need addressing, all have to be at optimal levels (not just in range) for thyroid hormone to work but unfortunately doctors don't know this as they're not taught nutrition.
It won’t be Almus! That is repackaged Actavis which is what it says on the PIL and blister.
Oh, I know Almus and Actavis are the same. Isn't it Boots that uses the Almus brand? Just trying to give the OP all the different names to look for as she doesn't appear to know what brand she's taking.
Thankyou, its true I don't know much, yes I'm in the UK. I feel better from what you said, I suspect the dose I'm given is not nearly enough but realise it takes time. I will request my readings again . I noticed I am struggling swallowing food like I have a lump ( I can't see or feel externality) .I've had no advice over my bones just told not to take any supplements ( bvits) which I have not but did prior to . I run my own business & can't even muster the strength to deal with work @ min .thanks for your insight everyone .
We cannot possibly take in everything as we also usually have 'brain fog' or cannot make sense of what people say to us. These are quite usual symptoms.
Re lump - yes we can also experience that and it is unpleasant. It should resolve but always have something to drink as you eat so you can swallow more easily.
Dosing starts at 50mcg and a blood test every six weeks with an increase of 25mcg until symptoms are relieved not when the numbers are somewhere in the range.
2 years ago when I was 45 they told me thyroid was slightly under when they confirmed my perimenapause, no further advice was given & no help offered, now I'm in full menopause & have full on hypothyroidism with antibodies (whatever ) I'm kind of angry with system really as felt like I dragged myself through last few years & thought it was all menopause.
Also back in may a friend bought me a fitness watch( I've stopped wearing now ) my heartrate was dicking about , was low @ 34 BPM even working & higher when I was sleeping, seemed to improve into the 40s @ rest after exercise but if I neglectedfor a day or so would plummet . that was first indicator of something not "right" tho I did think I was a momentous athlete @ first . I'm ditching it other than on work outs now. I find the idea of stopping the routine horrendous , I'd be in a coma I reckon if I didn't do it because I'm slowing like a slug& hate that .hard as it is .
It is a great deal to take in - but please read through your thread again - in particular the helpful replies people have kindly given you. greygoose shaws SeasideSusie I get the impression you are replying in frustrated tones rather than being appreciative of the suggestions given. There are almost 70,000 people on this forum and most of us are unwell. We do the very best to support members and we must show appreciation to each other too
If you want to learn more about the people who have tried to help then click onto their names in blue and you can read their Bio's - including mine
Acceptance is a huge part of the healing process - and of course it is a step at a time - small steps .....
Following the advice of good people here will have you feeling better in no time rather than listening to the negativity of your GP. Onwards and upwards
I do appreciate ,thankyou all .
You are welcome - keep posting and asking questions 😊
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